Side Effects of Mavacamten (Camzyos)

I have HOCM as well. Not on any prescriptions for it due to side effects of Metropolol (I have low pulse and BP when not on it)

Supplements have been helpful: Magnesium, copper, CoQ10 and natural blood thinners/anti inflammatories. I have changed my diet, removing all alcohol/junk foods/gluten/sugar.

It surprised me to read HCM may be a result of a copper deficiency and is one reason for supplementing. Zinc can deplete the copper and was why my primary also advised this.

I am noticing improvement. Now focusing on oral and sinus health (both can affect the heart...I had snoring issues for years), checking hormones to assure they are becoming more balanced, also improving air quality in my home and reducing toxins as these lead to inflammation and affect the heart.

In response to @jmr091805 and @jachrist
I had a septal myectomy in 2017. They did "crack open my chest". ( open heart surgery) They have to do that in order to shave down your heart. I had it done at UPENN. At the time I was offered a sepal ablation also however I chose not to go that route because sometimes it's not permanent. I have a friend that has to have her 2nd septal ablation. I just wanted it to be "one and done". Everyone is different. I was even on Mavacamten for 6 months. It did not agree with me. So last year I signed up for a clinical trial of Aficamten. That did not agree with me either. Both of those drugs are cardiac myosin inhibitors. Aparently I developed bad side effects from both. Not for me but they have worked wonders for others. Good luck and don't give up.

Hi jmr. You sound very low and I encourage you to try Camzyos. It has worked wonders for so many of us here. The side effects are hopefully minimal and will pass quickly. I’ve been lucky in having very few side effects but great results. I’m 20 years older than you and I’ve got my life back. Please persevere. Wishing you well,

jachrist is fortunate that an alcohol septal ablation worked so well for her, I was hoping for the same treatment. This is a very good example of how each of us is different. The doctors at Mayo and my cardiologist at home deemed that treatment inappropriate for me in order to achieve the best results because of the location of the thickness; I had a septal myectomy with excellent results.

Yes, I was fortunate to have had a successful alcohol septal ablation. Bless the Doctors at Mayo!!

@jachrist
How long ago did you have it?

Thanks for sharing this information. How was the crack-chest-shave-heart surgery? How long and how painful was the recovery? After having the heart shaved, does your heart function normally now? I am having all of the symptoms and recently had a cardiac catheterization that confirmed the obstruction. I started Camzyos yesterday morning. I'm having some side-effects and not (yet?) noticing any improvement. An hour after I took the firsst dose I felt out of it/dizzy. That happened again today. Late yesterday, while doing the normal kind of stressful things in daily life, the chest pressure and labored breathing was much worse but that got better. And this morning, my blood pressure upon waking up was 155/100. Cardiologist office said Camzyos would not cause higher blood pressure but I find it to be too much of a coincidence. More like cause and effect. I'm guessing these symptoms on day 1 (and today) of Camzyos were due to the Camzyos. I know there's no way of knowing if Camzyos will make my symptoms better, and I know that sooner or later, I will need the shave heart surgery...

Thank you for this information. I asked my cardiologist and she said alcohol septal ablation would not be the preferred path for me if the Camzyos doesn't work, and that crack-chest-shave-heart surgery would be better for me. I am treated by a cardiac group that is excellent. Believe me, I'm hoping Camzyos works and that I don't need the open heart surgery.

Thank you for your kind encouragement. I have been feeling low due to multiple serious health issues and some difficult life circumstances. I am working to turn my attitude around. I will persevere.

My surgery was back in 2017. I was in the hospital 2 weeks. Slow recovery. No, my heart is still not functioning the way a normal heart would. Probably never. They told me that. They could not shave it all the way down...Thus the need to try Mavacamten once it was approved by the FDA. Give it time. Your BP was probably up because you are anxious. I get like that. 🙂 I gave it 6 months before I bailed. Your quility of life is most important.
You may not need even open heart surgery. If the Mavacamten works...you will have a new lease on life. I did not give up...I even went on a clinical trial...Remember they did not have cardiac mysosin inhibitors back in 2017.
Message me any time 🙂